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Tuesday, July 20, 2010

Expect the Unexpected...

Hello folks! Another update here that I'm sure you all have been anticipating. Today I thought would be the first day to my cure. Today I thought I would be given the details of the transplant, the rid all of my disease...screech! (Picture the sound a record makes when you go back!) Not the case at all. My life is pretty much back. Can you believe it? I don't think I do yet...but I am enjoying a cold Miller Lite as I type this. Never did I think that would happen today. I never thought I would hear the things I did hear today either. Ok, so how do I explain this to make sense? My head is literally still spinning (and it's not from the Miller either.)

The best news is that I'm in COMPLETE REMISSION. There are NO signs of cancer. My lymph nodes are NOT active, they are enlarged. Enlarged how much? Less than 2 (2 what? No idea, but 2( and less than 2 is good. The biggest one I have is 1.92. Whew, in the clear. There was nothing on my PET scan that Dr. Schriber saw that showed a red flag. Whew. The biggest thing that came out of this meeting is that I'm ALK positive. For once in your life you want to test positive. You can either be ALK negative or positive with this type of cancer and I'm positive, the best case. This is really really really good news and he stressed that a million times in the meeting. Not only is my cancer rare to begin with, but being ALK positive is very rare too. Duh, here we go again...we all knew I was special!! This means the transplant may be too much. This means my progression percentage has already been increased from 20% to 30-40%. If I do the transplant NOW it would only increase it another 5%. So what do they want to do? Pretty much nobody knows. I could treat it aggressively and do the transplant and get that extra 5%...but is it worth it for the rare, yet possible future side effects? Or do I sit here and wait, hope and pray that it doesn't come back? I found out today too that the transplant is NOT a 100% cure. I would still have to live my life post-transplant wondering if it was going to come back. So, either way it will always be in the back of my head. I'm ok with that.

This decision is ultimately going to boil down to me. Dr. Schriber is going to chat with his fellow trusted doctor friends and see what they have to say, but he's under the impression it will come back with mixed decisions. I am leaning towards NOT doing it. I don't think an increase in 5% with rare yet possible lifelong side effects is worth it. Do you? I'm asking for everyone's opinions too so if you have one, please let me know! I'd love to hear from you. I am to call him on Monday with my decision, but I'm not going to give it to him until I hear what he has to say after chatting with his friends.

We played out all the scenarios today and I have never heard the words "if" and "maybe" so much. We all know "maybe" is my least favorite word in the dictionary too! Ugh! There are a lot more details I'm leaving out, but I think I have probably confused you enough...

The other BEST news of they day is that I can live a normal life...hence the Miller Lite I am drinking now. I can go out with my friends, have a beer when I want, no restrictions. Just what I wanted to hear! I hope it continues.

How am I feeling? I'm a little overwhelmed, but in a GOOD way. I'm sad in only one aspect though. I feel like "my day" last Thursday was ruined. I feel like the day I heard there was no cancer in my body was compromised by the transplant talk. Now there most likely won't be a transplant. That's reason to celebrate too!!!

So, the time is almost here when I can start planning my celebration party. The time is almost here when I can start planning my much needed vacation! The time is almost here when my life is back for good. Ahhhh...doesn't that just make you all so happy? I really don't think it has sunk in for me. Not sure when it will yet either, but for now, I'm enjoying being cancer free.

The prayers work peeps, thank you so much. Just keep them coming that this nastiness doesn't come back. I don't think it will because it knows now it doesn't have a chance. I win. Period. Almost the End.

8 comments:

You kicked that cancer's ass just like we knew you would! I would be leaning toward putting this all behind you and praying that the rest of your life is cancer free. You have a great attitude and that will go a long way for you. WAY TO GO, Erin!! I am so freakin' happy for you! :))

Oh, Erin. I have tears reading this. I am so happy for you. I have a dear friend who was diagnosed with breast cancer right after her husband died from prostate cancer. She had surgery to remove it and then decided against chemo and did radiation therapy followed by Tomoxifin (sp?). I went with her to the doctor and my question was - if it comes back, can it be treated? His answer was Yes. She just couldn't do chemo - so, my advice to her was not to do the chemo. She's totally cured after 8 years. Everyone is different. Follow your gut. Ask the doctor if it can be treated if it comes back. I think very positive things for you, but know this is your decision and no one elses. Best of luck.

Erin - congrats!!!! Your positive attitude and prayers did the trick. Go with what you feel is comfortable. When my mom got breast cancer she got three different opinions from different doctors, I would at least consult one other physician. My mom's first doctor missed her breast cancer, which she found on her own, so definitely be vigiliant with your own health. Your attitude has been amazing and has carried you well through this time in your life - that's invaluable. I will still be praying for full remission forever.

Oh yeah, one more thing, my mom did surgery, then chemo, but no radiation, but then opted for a double masectomy and histerectomy (sp?) (just in case b/c there were suspicious cells) just to be on the safe side and not to worry. She has been cancer free since February 2003.